Local mom starts Bee Happy day to raise awareness for Grin2B
Christina and David Dyck of Oxbow experienced mixed emotions when the doctors finally put a name to what their daughter was experiencing. They were relieved to finally have a name for what was going on, yet, terrified of the unknown as there was not much information or research available to them to help them navigate the years to come. The diagnosis came when their daughter was just over a year old.
Leighton, their daughter, was diagnosed with a Grin2B deletion. Grin2B refers to a gene on the 12th chromosome. The diagnoses relates to the gene being either missing, duplicated or rearranged. This gene is responsible for sending chemical messages to the brain.
These mutations to the gene generally happen spontaneously at or after conception and are not generally found to be genetic. There are currently just over 80 people known worldwide with a Grin2B chromosomal mutation. Because the Grin2B diagnosis can cover mutations, rearrangements, deletions, etc, there aren’t a specific set of symptoms experienced by all. There are, however, some symptoms seen in many of the people affected by Grin2B. These include: low muscle tone, a developmental delay, intellectual disabilities, delayed speech or non-verbal.
There is currently no cure for Grin2B and very little is known about it. Many of the people with Grin2B benefit from physical, occupational and speech therapies.
After receiving the diagnosis, Christina and David began reaching out to websites and Facebook groups for information and support. One group, the Grin2B Family Support group on Facebook offered Christina and David an avenue to connect with other families experiencing the same things. Christina said, “it is nice to have a place to talk about your kids where everyone gets it.”
June 12 begins Rare Chromosome Disorder Week, which encompasses Grin2B. Christina decided to encourage awareness in our local community by developing Bee Happy Day which is a play on Grin (happy) 2B (bee), or bee happy with a bee as the mascot for the cause. Bee Happy day encourages participants to wear black and yellow to help raise awareness of Grin2B. She shared it with the school and her online support group and the response was overwhelming.
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